21. TJ's Journal - Learning About Apert Syndrome About apert syndrome and how it has affected the life of a baby boy named TJ and his family.Category Health Support Groups Facial Differences apert syndrome...... and was 21 inches long. I guess you could say I'ma pretty special baby. Yousee, I was born with apert syndrome. apert syndrome is extremely rare. http://www.califariel.com/tj/

Welcome, Family and Friends to... TJ's Progress TJ's Family Contact Us About Apert Syndrome ... E-mail Us CF Webring is on the ASLinks Page TJ's visitors count FastCounter by bCentral Update on TJ - 11/25/2000 Well, Taylor's coming upon a year old now, and he's been through quite a lot. This little boy has been the strongest person we've ever known... Read more progress Hi - I'm TJ . My full name is Taylor Jacob Wilson, and I was born on December 15, 1999. I weighed 9.2 lbs. and was 21 inches long. I guess you could say I'm a pretty special baby. You see, I was born with Apert Syndrome . You'd probably think I was very unlucky, but the truth is, I have so much love and help surrounding me from all my family and friends, that I feel very lucky in spite of my disorder. I have a long and serious journey ahead of me. My parents, Mark and Cynthia Wilson, have spent a tremendous amount of time educating themselves and fighting for the right care for me. I spent a good portion of my first month in and out of hospitals learning to eat and breathe (two very important things, my mom said). I have been gaining weight and sleeping a little more. Apert Syndrome is extremely rare. Recent figures show less than 200 cases in the U.S.. It's classified more commonly as a craniofacial disorder, and for me that means lots of operations with the 1st one now complete and the next one in 3 months

22. Andrew's Apert Journey: What Is Apert Syndrome? SITE LINKS What is Apert's Syndrome? Apert's the Enigma of Chromosome No.10. CraniofacialWork at Columbia CPMCnet. apert syndrome FacesCranio Disorders. http://exalter.net/apert/apert.html

SITE LINKS: What is Apert's Syndrome? Andrew: Born With Apert's Andrew's Early Saga ... Andrew's Image Gallery (These Links Will Open In New Browser Windows) Craniofacial Surgery: Tennessee Craniofacial Center Erlanger Health System Erlanger on Apert: A PDF File Nat'l Org. for Rare Disorders: Craniofacial Work at Columbia: CPMCnet Apert Syndrome: Faces-Cranio Disorders Clinical Variability in Patients: Neurosurgery.Org A CONGENITAL DEFECT FOR ONE IN 200,000 ... BUT WHAT IS APERT SYNDROME? From data in an article entitled "Clinical Assessment and Multispecialty Management of Apert Syndrome," Lawrence C. Kaplan, MD, published in Clinics in Plastic Surgery - Vol. 18, No. 2, April 1991. What Is Apert Syndrome? M ajor Features of Apert Syndrome Prematurely fused cranial sutures A retruded midface Fused fingers Fused toes Possible Related Features of Apert Syndrome These have been observed in some cases of Apert syndrome, although whether they were caused by Apert syndrome is uncertain.

23. CCDD: Apert Syndrome The Center for Craniofacial Development and Disorders (CCDD), at Johns HopkinsUniversity, has a comprehensive list of apert syndrome links and articles. http://www.hopkinsmedicine.org/craniofacial/Gateway/ApertSyndrome.cfm

Site Map About Us Family Physician ... Feedback Home About Us Family Physician Scientist ... Feedback Questions: CCDD Site Issues: Webmaster Apert Syndrome This syndrome involves abnormalities of head shape and hand/foot development. The fingers and toes are fused together, giving the appearance of a mitten or sock. It can also be associated with internal organ malformations. Visit these Apert Syndrome links to learn more: Family: Apert Syndrome Introductory Article - Apert syndrome is a type of birth defect that occurs in about 1 of every 100,000 to 160,000 births. Infants with Apert syndrome are born with abnormalities of the face, skull, hands, and feet. This condition was first recognized by, and is named for, a doctor named Frederick Apert, who studied the condition in several children in 1942. Physician: Apert Syndrome Advanced Article - Within the spectrum of craniosynostosis disorders caused by mutations in the fibroblast growth factor receptor genes, Apert syndrome is somewhat unique. Not only is the pattern and development of craniosynostosis different from the related disorders of Crouzon and Jackson-Weiss syndromes, but the extracranial effects are strikingly different. Related Web Sites Site Notes

24. CCDD: Physician: Patient Care: Descriptions Of Disorders: Apert Syndrome Within the spectrum of craniosynostosis disorders caused by mutations in the fibroblastgrowth factor receptor genes, apert syndrome is somewhat unique. http://www.hopkinsmedicine.org/craniofacial/PatientCare/Article.cfm?ArticleID=1&

25. Intro Screen... Written by father of child with apert syndrome. Contains biographical detail, and links to apert syndrome Category Health Support Groups Facial Differences apert syndrome...... Skip Intro . http://members.aol.com/ApertSyn/

Skip Intro Skip Intro

26. Apert Syndrome: Craniosynostosis & Andrew's First Surgery A site about apert syndrome and our son Andrew's painful journey with this congenitaldisorder. Personal account from Amy Esler, a girl with apert syndrome. http://members.aol.com/ApertSyn/surgery1.html

What is Apert's Syndrome? Andrew: Born With Apert's Andrew's Early Saga Can Andrew Hear Us? ... Neurosurgery.Org A FIRST SURGERY FOR A RARE TIKE ... A TROOPER AND SOLDIER WHO FORTUNATELY WON'T REMEMBER THE EVENT SEPTEMBER 1999 An August Week: Surgery for Our Andrew So His Brain Has Room to Grow BY JOHN MICKELSON E arly on the morning of August 17, 1999, our Andrew was complaining because we couldn't feed him anything for almost six hours prior to surgery. As the sun rose over University Hospitals, we drove in to admit our son for the operation needed to free Andrew's pair of fused skull plates and move his forehead forward a bit. Without this critically timed procedure, Andrew would likely become mentally retarded, as a developing brain needs room to grow and his fused skull provided no such opportunity. A scheduled 7:30 a.m. surgery got delayed until almost 11 a.m., as a three-year-old girl scheduled for a cleft palette operation the day before got bumped into this morning's first surgical spot. During the wait, our pastor, my sister, my wife's former boss (who happened on by, as he was in for a pacemaker adjustment), and neighbor friends came to join us in the surgical waiting area. Dr. Iskandar notified us around 2:30 p.m. that the surgery was complete.

27. Apert Syndrome Support Group No messages are screened for content. apert syndrome support group. Email Addresscopperhd87@aol.com Laurie, I am very familiar with Apert's syndrome. http://neuro-www.mgh.harvard.edu/forum_2/ChildNeurologyF/ApertSyndromesupportgro

This Web Forum is not moderated in any sense. Anyone on the Internet can post articles or reply to previously posted articles, and they may do so anonymously. Therefore, the opinions and statements made in all articles and replies do not represent the official opinions of MGH and MGH Neurology. Neither is MGH or MGH Neurology responsible for the content of any articles or replies. No messages are screened for content. Apert Syndrome support group This response submitted by Resa on 3/22/99. Email Address: copperhd87@aol.com Laurie, I am very familiar with Apert's syndrome. For the past year I have been on a listserver with the parent's of children with Apert's syndrome. You will find a lot of information and instructions for joining the listserver at www.apert.org. This page was constructed by the father of a child with Apert's syndrome. I don't think you could possibly find more information anywhere. From what I know about Apert's, I find it next to impossible to believe that a child would not be diagnosed until they are 2 1/2. Apert's has very distinct physical characteristicsclosed skull sutures and webbed fingers and toes among many, many other things. Of the many Apert's families I have come to know, their children were all diagnosed at birth or shortly thereafter. Their medical problems require immediate attention, and by the time they are 2 1/2, the children have already undergone several surgeries. Teeter's Page at www.apert.org will have all the details. The parent's on the listserver can provide your friend with the support and any other information she will need. Good luck to her.

28. NORD - National Organization For Rare Disorders, Inc. apert syndrome. To purchase fulltext report ($7.50) View Cart/Checkout. Copyright1986, 1988, 1990, 1992, 1994, 1999, 2000 Synonyms of apert syndrome ACS I; http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Apert Syndrom

29. EMedicine - Apert Syndrome : Article By Harold Chen, MD, MS, FAAP, FACMG apert syndrome apert syndrome is named for the French physician who describedthe syndrome acrocephalosyndactylia in 1906. apert syndrome. http://www.emedicine.com/PED/topic122.htm

(advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search Link to this site Back to: eMedicine Specialties Pediatrics Genetics And Metabolic Disease Apert Syndrome Last Updated: February 21, 2002 Rate this Article Email to a Colleague Synonyms and related keywords: acrocephalosyndactyly Apert type, acrocephalosyndactyly type I, Apert's syndrome AUTHOR INFORMATION Section 1 of 10 Author Information Introduction Clinical Differentials ... Bibliography Author: Harold Chen, MD, MS, FAAP, FACMG , Chief, Professor, Department of Pediatrics, Section of Perinatal Genetics, Louisiana State University Medical Center Harold Chen, MD, MS, FAAP, FACMG, is a member of the following medical societies: American Academy of Pediatrics American College of Medical Genetics American Medical Association American Society of Human Genetics , and Teratology Society Editor(s): James Bowman, MD , Senior Scholar of Maclean Center for Clinical Medical Ethics, Professor Emeritus, Department of Pathology, University of Chicago; Robert Konop, PharmD

30. EMedicine - Apert Syndrome : Article Excerpt By: Harold Chen, MD, MS, FAAP, FACM apert syndrome apert syndrome is named for the French physician who describedthe syndrome acrocephalosyndactylia in 1906. Excerpt from apert syndrome. http://www.emedicine.com/ped/byname/apert-syndrome.htm

(advertisement) Excerpt from Apert Syndrome Synonyms, Key Words, and Related Terms: acrocephalosyndactyly Apert type, acrocephalosyndactyly type I, Apert's syndrome Please click here to view the full topic text: Apert Syndrome Background: Apert syndrome is named for the French physician who described the syndrome acrocephalosyndactylia in 1906. Apert syndrome is a rare autosomal dominant disorder characterized by craniosynostosis, craniofacial anomalies, and severe symmetrical syndactyly (cutaneous and bony fusion) of the hands and feet. It probably is the most familiar and best-described type of acrocephalosyndactyly. Reproductive fitness is low, and more than 98% of cases arise by new mutation. Pathophysiology: During early infancy ( <3 mo), the coronal suture area is closed prematurely. A bony condensation line beginning at the cranial base and extending upward with a characteristic posterior convexity represents this occurrence. Anterior and posterior fontanelles are widely patent. The midline of the calvaria has a gaping defect, extending from the glabellar area to the posterior fontanelle via the metopic suture area, anterior fontanelle, and sagittal suture area. The skull with gaping midline defect appears to permit adequate accommodation of the growing brain. The lambdoidal sutures appear normal in all cases. During the first 2-4 years of life, the midline defect is obliterated by coalescence of the enlarging bony islands without evidence of any proper formation of sutures. An extreme short squama and orbital part of the frontal bone together with the posterior convexity of the coronal bone condensation line suggest that growth inhibition in the sphenofrontal and coronal suture area has its onset very early in fetal life.

31. Apert Syndrome Articles, Support Groups, And Resources apert syndrome articles, support groups, and resources for patientsfrom Med Help International (www.medhelp.org). apert syndrome. http://www.medhelp.org/HealthTopics/Apert_Syndrome.html

[Health Topics A-Z] A B C D ... Z Apert Syndrome Medical Glossary: APERT SYNDROME Support Groups: Apert Syndrome Pen Pals [Med Help Home] [Library Search] [Medical Forums] ... [Patient Network] Revised: 3/30/2003

32. APERT SYNDROME apert syndrome An inherited disease (autosomal dominant) or a spontaneously occurringdisease characterized by a peaked head and unusual facial appearance http://www.medhelp.org/glossary2/new/GLS_0465.HTM

APERT SYNDROME - An inherited disease ( autosomal dominant ) or a spontaneously occurring disease characterized by a peaked head and unusual facial appearance, due to the premature closure of the cranial sutures . A skull x-ray can confirm the diagnosis . Treatment is surgical. Med Help Home Search Ask the Doctor Patient Network The medical glossary has been made possible by a generous donation from:

33. Apert Syndrome - The Knowledge Database Of The Swedish National Board Of Health apert syndrome To the Swedish version. apert syndrome or acrocephalosyndactylybelongs to the group of congenital craniofacial malformations. http://www.sos.se/smkh/2001-110-5/2001-110-5.htm

Socialstyrelsen 106 30 Stockholm e-post With effect from 2001, the National Board of Health and Welfare classifies its publications into various types of document. This an Overview of Knowledge . That means that the report is based on science and/or proven experience. Overviews of knowledge among other things are to provide support for knowledge-based care and treatment, method development and other improvement work, encourage and facilitate quality follow-up and/or encourage efficient utilisation of resources. The National Board of Health and Welfare is responsible for the contents and conclusions. Apert Syndrome Acrocephalosyndactyly Table of Contents The disease/injury/diagnosis Incidence Aetiology of the disease/injury Heredity ... Database references Dokument date: 2002-01-31 HTML-version 1.0 English index Search The aphabetical list This is an excerpt from the knowledge database of the Swedish National Board of Health and Welfare on rare diseases. The concept of "rare diseases" is defined as: "Disorders or injuries resulting in extensive handicaps and affecting no more than 100 individuals in one million inhabitants". The ambition underlying the database is to provide up-to-date information on rare diseases and about the support and services these groups of people require. The disease/injury/diagnosis Incidence Approximately one child in 100,000 is born with Apert Syndrome. This means that in Sweden approximately two children with Apert Syndrome are born during a three-year period. The syndrome has been found all over the world, and is equally distributed between girls and boys.

34. Apert Syndrome : Meddie Health Search ITEMS LINKS Andrew's Journey with Apert's Written by father of child withapert syndrome. (Rating 0.00 Votes 0) Rate It. What is apert syndrome? http://www.meddie.com/search/Health/Consumer_Support_Groups/Facial_Differences/A

HOME ADD A LINK MODIFY A LINK NEW LINKS ... TOP RATED Search Meddie: the entire directory only this category More search options Home Health Consumer Support Groups ... Facial Differences : Apert Syndrome ITEMS: LINKS: Andrew's Journey with Apert's Written by father of child with Apert syndrome. Contains biographical detail, and links to Apert syndrome stories and support sites. (Rating: 0.00 Votes: 0) Rate It Apert Syndrome Produced by Alliance of Genetic Support, this includes comprehensive information about the condition, an Apert listserve, newsgroup, links, webring and family homepages. (Rating: 0.00 Votes: 0) Rate It Apert Syndrome Resource for contacts, chat rooms, pen pals and other relevant links. (Rating: 0.00 Votes: 0) Rate It Krista's Page Written by her father, this contains biographical detail about living with Apert syndrome. (Rating: 0.00 Votes: 0) Rate It Swedish Apert Syndrome Information General information about Apert syndrome with photographs of people with the condition. English version follows Swedish text. (Rating: 0.00 Votes: 0)

35. ORPHANET® : Apert Syndrome Translate this page ORPHANET. ORPHANET database access. apert syndrome.Direct access to details Alias Home Page. http://www.orpha.net/static/GB/apert.html

ORPHANET database access Apert syndrome Direct access to details Alias : Home Page

36. Apert Syndrome Pen Pals apert syndrome Pen Pals. PO Box 115 Providence, RI 02901 Conditions apert syndrome;Acrocephalosyndactyly, Type I. Hours Answered MF, 930830 Voicemail yes. http://www.geneticalliance.org/diseaseinfo/displayorganization.html?orgname=Aper

37. 1Up Health > Apert Syndrome > Causes, Incidence, And Risk Factors Of Apert Syndr Comprehesive information on apert syndrome (Acrocephalosyndactyly). 1Up Health Diseases Conditions apert syndrome Causes, Incidence, and Risk Factors. http://www.1uphealth.com/health/apert_syndrome_info.html

1Up Health Apert syndrome Alternative Medicine Clinical Trials ... Health Topics A-Z Search 1Up Health Apert syndrome Information Apert syndrome Causes, Incidence, and Risk Factors Alternative names : Acrocephalosyndactyly Definition : A genetic disease which may be inherited or may occur without a known family history. It is characterized by premature closure of cranial sutures (seams between skull bones), which results in a peaked head and an unusual facial appearance. Causes, Incidence, and Risk Factors Apert syndrome is transmitted as an autosomal dominant trait (which means that only one parent needs to have the condition for a child to potentially be affected). Some cases also appear spontaneously without a family history. The condition is caused by mutations in a gene called fibroblast growth factor receptor 2. This mutation causes some of the bony sutures of the skull close prematurely (a process called craniosynostosis) which can cause asymmetric growth and give the head a distorted shape. The face is distinctive looking and there may be full-length webbing or fusion between the 2nd, 3rd and 4th fingers, as well as the toes. In addition, as the child grows, the bones in the hands and feet become progressively fused, which reduces flexibility and function. There are several other syndromes which have a similar appearance and include craniosynostosis (premature suture fusion): Carpenter syndrome (kleeblattschadel, cloverleaf skull deformity)

38. 1Up Health > Health Links Directory > Support Groups: Conditions And Diseases: F Sites. Andrew's Journey with Apert's Written by father of child withapert syndrome. Contains biographical detail, and links to Apert http://www.1uphealth.com/links/facial-differences-apert-syndrome.html

Home Contact Us Privacy Caring For Your Well Being Alternative Medicine Clinical Trials Health News Poisons ... Health Topics A-Z Search 1Up Health Health Directory Addictions Alternative Animal ... Weight Loss By Demography Child Health Teen Health Men's Health Women's Health ... Facial Differences : Apert Syndrome See Related Categories Health: Conditions and Diseases: Genetic Disorders Health: Conditions and Diseases: Rare Disorders Sites Andrew's Journey with Apert's Written by father of child with Apert syndrome. Contains biographical detail, and links to Apert syndrome stories and support sites. Apert Syndrome Produced by Alliance of Genetic Support, this includes comprehensive information about the condition, an Apert listserve, newsgroup, links, webring and family homepages. Apert Syndrome Resource for contacts, chat rooms, pen pals and other relevant links. Apert Syndrome Frequently asked questions and answers on Apert syndrome. Apert Syndrome Information Site Information about Apert syndrome from ApertInfo.com Krista's Page Written by her father, this contains biographical detail about living with Apert syndrome.

39. Apert Syndrome Teeter's Page What is apert syndrome? Teeter's Story. Teeter'sInternet Friends. Links to craniofacial sites we have found. A http://www.foundhealth.com/Health/Consumer_Support_Groups/Facial_Differences/Ape

Advertisement Foundhealth.com Search All Terms Any Term Tips Browse foundhealth.com Health calculators Fast Food Database Speakers Bureau How to evaluate sites Submit a site Contact us Home - main directory Top Health Consumer Support Groups Facial Differences : Apert Syndrome Teeter's Page - What is Apert Syndrome? Teeter's Story. Teeter's Internet Friends. Links to craniofacial sites we have found. A listing of medical journal articles which we are aware of, including addresses for requesting reprints. Other offline resources. Join the Apert Listserv. Help build the largest human-edited directory on the web. Submit a Site Open Directory Project Become an Editor Parts of the Open Directory made available on foundhealth.com have been modified. Home Health Tools Fast Food Database Vitamins and Minerals ... foundhealth.com The content provided on this web site is for information purposes only. It is intended to provide educational material and is not designed to provide medical advice. Please consult your health care provider regarding any medical issues you have relating to symptoms, conditions, diseases, diagnosis, treatments and side- effects. Terms and conditions.

40. ThirdAge - Adam - Apert Syndrome apert syndrome. Definition A genetic disease which may be inheritedor may occur without a known family history. It is characterized http://www.thirdage.com/health/adam/ency/article/001581.htm

document.write(''); document.write(''); document.write('<'); document.write('/SCRIPT>'); document.write(''); document.write(''); document.write('<'); document.write('/A>'); document.write('<'); document.write('/NOSCRIPT>'); document.write('<'); document.write('/IFRAME>'); Activities Computers Family Tree Health ... Prevention Apert syndrome Definition: A genetic disease which may be inherited or may occur without a known family history. It is characterized by premature closure of cranial sutures (seams between skull bones), which results in a peaked head and an unusual facial appearance. Alternative Names: Acrocephalosyndactyly Causes, incidence, and risk factors: Apert syndrome is transmitted as an autosomal dominant trait (which means that only one parent needs to have the condition for a child to potentially be affected). Some cases also appear spontaneously without a family history. The condition is caused by mutations in a gene called fibroblast growth factor receptor 2. This mutation causes some of the bony sutures of the skull close prematurely (a process called craniosynostosis) which can cause asymmetric growth and give the head a distorted shape. The face is distinctive looking and there may be full-length webbing or fusion between the 2nd, 3rd and 4th fingers, as well as the toes. In addition, as the child grows, the bones in the hands and feet become progressively fused, which reduces flexibility and function. There are several other syndromes which have a similar appearance and include craniosynostosis (premature suture fusion):

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